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The Sunflower Conversations

Author: Hidden Disabilities Sunflower

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The Sunflower Conversations are where we explore hidden disabilities through the prism of the Hidden Disabilities Sunflower.

In a world where it can be hard to feel like your story matters, we want to give you a space to share your experience. Whether you or someone you care about wears the Sunflower lanyard, we hope that by giving voice to these experiences, we can empower others and encourage more people to support people with invisible disabilities. 

95 Episodes
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Our guests are Karina Smith and Michelle Culbert, from South Florida, who both have Optic Nerve Glioma, a rare eye condition affecting sight that typically affects young children. It is a slow-growing brain tumour in or around the optic nerve, which connects the eye to the brain. As the tumour progresses, it presses on the optic nerve.Karina and Michelle believe they are the only two adults in Florida with this rare eye condition. Sadly, there is very little knowledge, advice, and guidance on how to treat optic nerve glioma in adults. They both explain how what the sudden onset of sight loss was like for each of them, physically and emotionally and the steps that they had to take to weather the mental health impact it took. We also hear about the treatment they have both had, which includes proton beam radiation therapy.Together, they are reaching out globally to other people with rare eye conditions to create a support community where people can share their experiences.If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.For supportONG.Awareness InstagramContact: ong.aware@gmail.comHosted by Chantal Boyle and Lynn Smith, Hidden Disabilities Sunflower. Want to share your story? email conversations@hdsunflower.comMusic by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website
CONTENT WARNING. The topic is eating disorders, and throughout the podcast, our guest will talk about their lived experiences, as well as signposting to charities for support. Please visit your healthcare provider if you are concerned about any issues relating to this topic.Undiagnosed autism and ADHD have played a part in Adam developing an eating disorder at secondary school. He battled through excruciating pain until the point of becoming hospitalised and, as a result, being left irreparably physically damaged. During the conversation, Adam shares his journey of recovery. He talks us through the different types of eating disorders and how they present. We also cover the dangers of diet culture, societal pressures, stigma and shame.Adam has a stoma as a result of severe intestinal issues and a prolapsed bowel, as well as musculoskeletal syndrome, all of which leave him with chronic pain and fatigue. If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.For supportBEAT UKF.E.A.S.TFirst Steps EDHosted by Chantal Boyle and Paul Shriever, Hidden Disabilities Sunflower. Want to share your story? email conversations@hdsunflower.comMusic by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website
Our guests are Marcus Tanner and Dorothy Watson, CEO of The Sunnybank Trust.“The Sunnybank Trust supports adults with a learning disability across North East Surrey to have confidence, opportunities and control over their own lives and to be able to live without prejudice and discrimination.”In our conversation, we tackle the myths and stigma attached to learning disabilities (LD) and what action must be taken to dispel them. The statistics see less than favourable outcomes for people with an LD with mental health and employability. For the most part, this is due to barriers to access.There is an overwhelming call to collaborate and work with people with LD to share lived experiences and provide advice to improve disability inclusion. These actions will significantly improve life opportunities and access for the LD community. If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.For supportThe Sunnybank TrustChallenges of people with learning disabilities in primary care animation We are Understand Us, the Learning Disability Experts filmHosted by Chantal Boyle and Paul Shriever, Hidden Disabilities Sunflower. Want to share your story? email conversations@hdsunflower.comMusic by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby websiteFollow us on socials:InstagramTik TokFacebookLinkedIn Twitter
CONTENT WARNING. The topic is eating disorders, and throughout the podcast, our guest will talk about their lived experiences, as well as signposting to charities for support. Please visit your healthcare provider if you are concerned about any issues relating to this topic. Our guest, Zoe Summers, joins us to talk about eating disorders (ED), which remain a taboo subject and can be lethal. Through Zoe’s lived experience, she has become an Ambassador for the eating disorder charity BEAT UK.In the conversation, we cover different types of eating disorders, and more specifically, binge eating disorder and orthorexia. Zoe explains the characteristics of these and how they affected her.We chat about some of the reasons why eating disorders develop and what help and support exist to recover. As well as suggestions for approaching the subject and essential do's and don'ts about what to say to someone with an ED.If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.For supportBEAT UKHosted by Chantal Boyle, Hidden Disabilities Sunflower. Want to share your story? email conversations@hdsunflower.comMusic by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby websiteFollow us on socials:InstagramTik TokFacebookLinkedIn Twitter
Jo joined us from the charity Different Strokes to answer Sunflower wearers' questions and to explain what a stroke is, the signs to look out for, and what action to take, as well as advice about the support available to patients.Hayette had a stroke at age 32 and has been on a long journey of rehabilitation and recovery; she talks us through the surgeries she had and the everyday things that she has had to relearn through a multitude of therapies.F.A.S.TF is face.A is arm.S is speech.T is time.Different Strokes add two additional letters to the acronym B.E.F.A.S.T = B. Balance and E. Eyes - find out why by listening to the full conversation, which is packed full of helpful advice. If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.For supportDifferent StrokesHelpline 0345 130 7172 Hosted by Chantal Boyle, Hidden Disabilities Sunflower. Want to share your story? email conversations@hdsunflower.comMusic by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby websiteFollow us on socials:InstagramTik TokFacebookLinkedIn Twitter 
This podcast was recorded as an Instagram Live.Hayette is a mother, wife and stroke survivor.  Aged 32 Hayette experienced a severe stroke called a subarachnoid haemorrhage, followed by an ischaemic stroke a few days later. A subarachnoid haemorrhage (SAH) is a life-threatening type of stroke, caused by bleeding into the space surrounding the brain.Our conversation covers the journey Hayette has been on and the impacts the strokes had on her cognitive and physical abilities. Her work, her relationships and her ability to resume work.Hayette, is a survivor in every sense of the word and this makes for a fantastic conversation.If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.For support:Different StrokesHeadwayStroke Association Hosted by Chantal Boyle, Hidden Disabilities Sunflower. Want to share your story? email conversations@hdsunflower.comMusic by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby websiteFollow us on socials:InstagramTik TokFacebookLinkedIn Twitter
William Vanderpuye is a social worker and is autistic. In this conversation, William shares what the Sunflower means to him and the confidence and support it has given him while in education at university and now in employment.William's employer, Sutton Council, is supportive and offers understanding and kindness so that he can succeed and excel in supporting families with learning disabilities.This testimonial gets to the heart of what the Sunflower seeks to do, the people it aims to serve, and the community it seeks to improve.Please share this podcast to help increase knowledge and understanding of the Hidden Disabilities Sunflower.If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.Hosted by Chantal Boyle, Hidden Disabilities Sunflower. Want to share your story? email conversations@hdsunflower.comMusic by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby websiteFollow us on socials:InstagramTik TokFacebookLinkedIn Twitter
Dr Louise Newson is a GP & Menopause Specialist and joined us to share her knowledge and expertise. Dr Newson and her team at Newson Health are at the forefront of advocating for women to get the appropriate treatment to support their hormone health. As well as investing in research and training to help healthcare practitioners make the best decisions for their patients.We cover a wide range of questions, from perimenopause and menopause to how oestrogen, progesterone and testosterone impact the body and the importance of good hormone health to help prevent serious inflammatory disabilities later in life, such as cardiovascular disease and osteoporosis. Dr Newson also answers questions from Sunflower wearers.If you are experiencing any issues discussed in this podcast please contact your healthcare practitioner.For support:Download the Balance appNewson HealthHosted by Chantal Boyle, Hidden Disabilities Sunflower. Want to share your story? email conversations@hdsunflower.comMusic by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby websiteFollow us on socials:InstagramTik TokFacebookLinkedIn Twitter
This podcast was recorded as an Instagram Live.Maddie shared her lived experience of being wrongly diagnosed with mixed anxiety, depression and panic disorder before eventually being diagnosed with autism when at university aged 21. In our chat, we talked about her life as she tried to navigate the neurotypical world and her newfound approach to life since being diagnosed with ASD.Maddie explains how her sessions with a counsellor who was explicitly trained in ADHD and Autism brought the realisation that all along, her difficulties resulted from being overwhelmed, over-stimulated, and the need to know exactly what lay ahead, as opposed to depression and anxiety.If you are experiencing any issues discussed in this podcast, please contact your healthcare practitioner.For support:National Autistic Society Hosted by Chantal Boyle, Hidden Disabilities Sunflower. Want to share your story? email conversations@hdsunflower.comMusic by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby websiteFollow us on socials:InstagramTik TokFacebookLinkedIn Twitter
Fay Durrant is a Wellbeing and Menopause coach and joined us to discuss perimenopause and menopause as well as her own lived experience with perimenopause.The conversation allows our hosts, Chantal and Paul, to speak about their experiences with having and living through perimenopause. Also discussed is the impact of this phase of life on relationships and work, as well as some of the hundreds of physical and mental symptoms.We finish with some self-care tips to support mental health, including mindfulness activities and breathwork.If you are experiencing any issues discussed in this podcast please contact your healthcare practitioner.For support: Wellness & Wilderness Get the "How to feel like less of a crazy B*t$h!"   Perimenopause mini ebook download. Fay Victoria (Wellness Wonder Woman) Durrant | LinkedIn In Her Right Mind | No-nonsense Menopause Advice written by Andrea Newton to help men navigate menopause with the women in their life. Hosted by Chantal Boyle and Paul Shriever, Hidden Disabilities Sunflower. Want to share your story? email conversations@hdsunflower.comMusic by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby websiteFollow us on socials:InstagramTik TokFacebookLinkedIn Twitter
Beth Johnsson joins us to talk about Rett Syndrome. This rare genetic disorder affects brain development, resulting in severe mental and physical disability.It's estimated to affect around 1 in 10,000 girls born yearly and is rarely seen in boys.Beth talks about her personal experience with her daughter, Hannah, who was diagnosed with the condition when she was very young. Hannah now has a complex list of disabilities, including epilepsy, scoliosis, apnoea, respiratory problems, and digestive problems. She's waiting for a gastrostomy. She might need spinal surgery. There are over 50 symptoms of Rett Syndrome, some of which are life-threatening.Despite Hannah's developmental regression, she brings joy to their busy household with her side-eye glances at her parents and giggling at her younger brothers' antics.For support:Reverse Rett Rett UKPortageMencapHosted by Chantal Boyle and Paul Shriever, Hidden Disabilities Sunflower. Want to share your story? email conversations@hdsunflower.comMusic by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby websiteFollow us on socials:InstagramTik TokFacebookLinkedIn Twitter
Sandy Kaur joins the Sunflower Conversations to discuss mental health and suicide prevention in Punjabi and South Asian communities and how her charity Sehhat is tackling the topic.We discuss the barriers to seeking support, including the obvious one, which is language and the cultural fear of judgment from the community.Whether talking about mental health or processing grief after suicide, Sandy explains how essential it is to provide access—starting by building trust and creating safe spaces to start those conversations.If you liked this podcast, please leave a review, subscribe and share.If you are experiencing any issues discussed in this podcast please contact your healthcare practitioner. For support  SehhatMind Hosted by Chantal Boyle, Hidden Disabilities Sunflower. Want to share your story? email conversations@hdsunflower.comMusic by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby websiteFollow us on socials:InstagramTik TokFacebookLinkedIn Twitter
Lisa Nice has multiple sclerosis (MS). She joins Chantal and Paul to explain how the autoimmune and neurodegenerative condition affects her. We also discuss her employer, Comic Relief's approach to diversity, equity and inclusion.Diagnosed late in life, it came as a shock, and it took a while for Lisa to accept her diagnosis, which is relapsing-remitting. There are many symptoms of MS, and Lisa shares the ones she has, how she manages them, her treatment, and the adjustments she has had to make at work and in her social life.Footdrop – the individual has difficulty lifting the front part of the foot (i.e. the front of your foot may drag on the ground as you walk)Allodynia – pain due to a stimulus that does not normally provoke pain (i.e. a light touch causing pain when it wouldn't normally)   If you liked this podcast please leave a review, subscribe and share.If you are experiencing any issues discussed in this podcast please contact your healthcare practitioner. For support  MS TrustMS SocietyHosted by Chantal Boyle and Paul Shriever, Hidden Disabilities Sunflower. Want to share your story? email conversations@hdsunflower.comMusic by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby websiteFollow us on socials:InstagramTik TokFacebookLinkedIn Twitter
Our guests are sisters Bethany and Hannah Keime, who have a condition called Hypertrophic cardiomyopathy (HCM), a disease of the heart muscle where the muscle wall of the heart becomes thickened.Bethany and Hannah received a diagnosis in high school and have had to make significant changes to their lives and sporting passions. They have both been fitted with an implantable defibrillator, which saved Hannah's life when she fell into cardiac arrest while asleep in bed.Together Bethany and Hannah have created a support charity called HEARTCHARGED to build a community for other young people with the same condition and needing a shoulder to lean on. They are committed to educating and raising the profile of this chronic illness and the importance of AEDs (defibrillators).If you liked this podcast please leave a review, subscribe and share.If you are experiencing any issues discussed in this podcast please contact your healthcare practitioner.For supportHEARTCHARGED @heartcharged - Instagram and FacebookAmerican Heart AssociationBritish Heart Foundation Hosted by Chantal Boyle and Lynn Smith, Hidden Disabilities Sunflower. Want to share your story? email conversations@hdsunflower.comMusic by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby websiteFollow us on socials:InstagramTik TokFacebookLinkedIn Twitter
Ginger Ragaishis is Miss Vermont Teen 2023 and is currently a junior in high school. Ginger has ADHD and learning disabilities and uses her lived experience to deliver talks to younger students to give them the confidence to be their authentic selves while at the same time raising awareness about acceptance.We talk about how Ginger's processing disorder and ADHD have affected her educational experience and how essential the adjustments made by her school have been to allow her to excel academically.Ginger has experienced depression and discusses her triggers and how she advises young people to seek advice.If you liked this podcast please leave a review, subscribe and share.If you are experiencing any issues discussed in this podcast please contact your healthcare practitioner.Hosted by Chantal Boyle, Hidden Disabilities Sunflower. Want to share your story? email conversations@hdsunflower.comMusic by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby websiteFollow us on socials:InstagramTik TokFacebookLinkedIn Twitter
Eva Abley joined Paul and Chantal at Disability Expo to share her life experience of living with cerebral palsy.Eva is 15 years old and a 2022 Britain’s Got Talent finalist who endeared the country when she took to the stage to entertain, amuse and delight with her quick-witted and observant humour and comedy routines.Close to Eva's heart is her work as a disability activist, and in this conversation, we talk about her lived experience of cerebral palsy, mental health, social exclusion and her activisit work.This is a live recording.If you liked this podcast, please leave a review, subscribe and share.If you are experiencing any issues discussed in this podcast please contact your healthcare practitioner.Watch Eva's BBC programme - My Life Eva's Having a BallHosted by Chantal Boyle and Paul White, Hidden Disabilities Sunflower. Want to share your story? email conversations@hdsunflower.comMusic by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website
 Liz Jewell is the Family Support Counsellor at Fragile X Australia, and Monique Mitchell is the mum of two children with Fragile X Syndrome. This conversation teaches us about Fragile X characteristics and the difference between boys and girls. We also include a Q&A from the Sunflower community, which is very insightful.If you are experiencing any issues discussed in this podcast please contact your healthcare practitioner.For support and informationFragile X AustraliaFragile X UKHosted by Chantal Boyle, Hidden Disabilities Sunflower. Want to share your story? email conversations@hdsunflower.com Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website
Solène joined Ruth and Chantal at Disability Expo to share her life experiences of living with BPD and ADHD. It was a deep and meaningful conversation where Solène revealed the highs and lows, including how her therapy has given her the tools to accept and embrace her mental health and ADHD.This is a live recording.If you are experiencing any issues discussed in this podcast please contact your healthcare practitioner.For support and informationBDP BunchMindBe Beyond BordersHosted by Chantal Boyle and Ruth Rabét, Hidden Disabilities Sunflower. Want to share your story? email conversations@hdsunflower.com  Music by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website
For our first-ever face-to-face Sunflower Conversations recording, Chantal was joined by Patrick Fopma, who is autistic and who describes himself as having Aspergers. In our conversation, we discussed his differences, including how he wanted to fit in when he was at school. We cover his journey through education and the barriers he faced to gaining employment. Patrick offers some great advice to young autistic people but also to employers.This was a live recording, and as such, the sound isn't the best quality.If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner.For supportNational Autistic SocietyHosted by Chantal Boyle, Hidden Disabilities Sunflower. Want to share your story? email conversations@hiddendisabilitiesstore.comMusic by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website
Karen is a beauty pageant queen who joins the conversation to discuss her diagnosis, treatment and recovery.Karen shares intimate details of her health journey in a humorous and endearing way. After coming to terms with her post-surgery body,  Karen enters beauty pageants to build her self-confidence and help support other women and raise cancer awareness.If you are experiencing any issues discussed in this podcast please contact your GP or healthcare practitioner. For supportMacmillanBowel Cancer UKColostomy UKHosted by Chantal Boyle, Hidden Disabilities Sunflower. Want to share your story? email conversations@hiddendisabilitiesstore.comMusic by "The Emerald Ruby" Emerald Ruby Bandcamp and Emerald Ruby website 
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